“What Story Am I In?” Times Two:
Narrative as a Foundation for Active Patient Participation

Tony L. Kroll, Department of Communication, Texas A & M University,
Baylor College of Medicine, Houston VA Medical Center and
Houston Center for Quality of Care & Utilization Studies

Barbara F. Sharf, Department of Communication, Texas A & M University

Paul Haidet, Department of Medicine, Baylor College of Medicine,
Houston VA Medical Center and Houston Center for Quality of Care & Utilization Studies

Correspondence concerning this manuscript should be addressed to Tony L. Kroll, Department of Communication (MS 4234), College Station, TX 77843-4234, kroll@tamu.edu.

This project was co-funded by grant number PO1 HS10876 from the Agency for Healthcare Research and Quality and the National Center of Minority Health and Health Disparities. Dr Haidet is supported by a career development award from the Office of Research and Development, Health Services R&D Service, US Department of Veterans Affairs. We are grateful to “Joanne” for contributing her story to this project.

A recent cover of the Journal of the American Medical Association featured Portrait of Emy (Attachment 1), a painting by the German artist, Karl Schmidt-Rottluff. In her description of the work, Terese Southgate, MD (2003) focused the viewer’s attention to the woman’s eyes and how they “express a tension,…a desire to see, a desire for truth, but one coupled with a simultaneous fear of knowing…a wish to reveal herself and a simultaneous fear of doing so lest she be rejected” (p. 139). Another image by the same artist, Moon Rising (Attachment 2) was featured by Southgate for the cover of an issue from 1998. For Moon Rising, Southgate (1998) describes how the viewer has the opportunity to see the image “not as [it] appears to be, but rather to see…the infinite possibilities of what could become…Things speak sometimes in a thousand voices, not one of them the voice we thought we knew” (p. 1419). While it may not be Southgate’s purpose as Cover Editor of the JAMA to send specific messages in the form of visual images on the covers of the Journal, these two images provide a richness for a theoretical understanding of the interaction between patient and provider. Viewed through the lens of narrative theory, the interaction between patient and provider in a medical encounter has the same ability to be characterized by as a symbolic interaction that is facilitated by multiple “voices.”
This essay is built on a foundation of narrative theory and will rely on the story of Joann, a 34 year old woman with diabetes. Like many contemporary patients, especially those with chronic conditions that require a re-orientation of lifestyle, Joann is striving to be an active participant in her own healthcare. Joann’s task in becoming an active participant is challenged by the fact that there is no formal education and few informal guidelines for “activating” patients. For each person, being an active health care participant may mean something different, and that meaning may transition and evolve over time. As Joann tells the story of her diabetes, she expresses her efforts-and sometimes tensions-in striking a balance between accepting advice and guidance from her physician, Dr. Winner, while at the same time aspiring to transition to a place where she would assume more control in manageing her illness with Dr. Winner becoming “more of a consultant than a controller.” Joann’s story is used in order to better understand how a patient makes sense of the idea of being and becoming an active health care participant, and the intersection of Joann’s story with the work of narrative theorists gives the opportunity to enhance current models of provider-patient interaction. This essay will first consider a narrative point of view for the interaction between patient and provider, next we will briefly review of the scholarship concerning the ways in which patients play a crucial and unique part in affecting the process of the medical consultation, we end by weaving the two together along with Joann’s story to demonstrate a model for patient provider interaction.
Narrative as a Foundation for Patient Provider Interaction
Scholars working from a narrative perspective describe the medical encounter as a type of co-constructed story between the patient and the provider (see, e.g., Kleinman, 1998; Mishler, 1984). Theorists such as these have helped us to realize that through the patient-provider interaction, the story of the patient’s health history and present complaints are created. What remains to be considered, however, are the ways in which multiple stories can influence a patient’s involvement with their own health maintenance and well being. Walter Fisher (1987) suggests that human beings are by nature story telling creatures and that individuals use story formats to make a disorderly world coherent and to justify their chosen ideas and actions (see also, Bruner, 1990). Allison (1994) suggests that human beings are not only story telling creatures, but that any individual act of story telling is embedded in an ongoing act of story living, or that any story about current life experiences shared with others is one in which the narrator is both in the midst of telling and in the midst of living or experiencing. Such a notion of story living is exemplified in the medical encounter by a patient who might present with a story of a specific complaint that is a result of a larger disease process that might be part of an even larger story of illness within the patient’s family history. Through this layering of stories, or this type of managing multiple lived story experiences, we can get a glimpse of what Terese Southgate (1998) was describing in Schmidt-Rottluff’s work as “things speaking in a thousand voices, not one of them the voice we thought we knew” (p. 1419).
A story telling perspective for the medical encounter offers an opportunity to consider the contributions of other narrative theorists such as Kristen Langellier (1999) who describes how the telling of a story occurs in what is described as a liminal space, or at a threshold, a border, at the margin, or in a transitional space, or at a site of negotiation and struggle. It is in this same liminal space, or as described by Cheryl Matingly (1999) as a “gap, a space of desire created by the distance between where the protagonist is and where she wants to be” (p. 70), where action can be created. Mattingly explains that creating such action requires careful balance between challenge (confronting obstacles, taking risks, facing enemies, overcoming dangers) and likely achievement, or the idea that there must be something worth doing. Mattingly posits that within this liminal space there should be suspense about an outcome, including hope for success and some reason to take risk. She suggests that for a healthcare provider to give an answer to the question “What story am I in?” is to make some initial sense of a situation where that health provider can act. In other words, by entering into the lived story of a patient, providers are able to reach a greater level of sense making regarding that individual patient’s treatment options and appropriate plan of care. Often, for a patient to answer the same question (What story am I in?) can be equally as significant not only in creating partnership with a provider, but in mediating between the multiple forces that create who she is and who she has become through the illness label. Being engaged in a story of illness can give the opportunity, as described by Terese Southgate (2003), “to hear the voices in ways we would have not previously recognized” (p. 139).
Similar to the notion of a liminal space, stories of illness have been explained in a number of different ways. Geist-Martin, Ray, and Sharf (2003) describe them as “open-ended resources - sources of healing and comfort, spiritual maturation, privileged moments of self-chance, epiphanies, turning points and lessons to live by” (p. 6). Myerhoff (1992) describes the story of illness as a “definitional ceremony, a strategy to show ourselves to ourselves and to arouse consciousness of ourselves as we see ourselves” (p. 234). In all ot these descriptions, the theorists suggest a need for a patient and provider to come together in a way in which they see themselves as being “in the same story” (Mattingly, 1999), and as a way for a patient who experiences chronic illness to see herself as being “in the same story” as the person she knew before the illness label. Through being together “in the same story,” both patient with self and patient with provider, a shared plot can be created that not only assists both patient and provider in making sense of illness, but also assists both patient and provider to “locate desire” (Mattingly, 1999, 107).
One way to mediate a being together “in the same story” is through what Arthur Kleinman (1988) describes as an explanatory model, or “notions that patients, families, and practitioners have about a specific illness episode” (p. 122). For Kleinman, an understanding of the patient’s explanatory model helps the provier in “organizing strategies for clinical care,” where as, the patient’s understanding of the provider’s explanatory model “assists patients and families to make more useful judgements of when to enter into treatment, with which practitioners, for what treatments, and at what ratio of cost and benefit” (p. 122). He suggests that negotiation among conflicting models between patient and provider can eliminate “an important barrier to effective care and almost always contributes to more empathic and ethical treatment” (p. 122).
Patient-provider partnership can transcend the physical spance and the physical dimension between patient and provider. Michael Schrage (1994) suggests that partnership or collaboration can even become a state of shared minds. While some providers and patients would resist the idea of a relationship characterized by such a notion of sharing, the perspective of a liminal space in which patient-provider interaction occurs provides insight into the opportunities that are available for those encounters in which the participants have a desire to build a partnership. The vulnerability of telling such personal stories as those required in a medical encounter, the vulnerability inherent in the desire to “express a wish to be reveal[ed]…and a simultaneous fear of doing so lest she be rejected,” (Southgate, 2003, 193) are performed in a liminal space.

Active Participation in Health Care

To begin thinking about what it means to participate actively while communicating with a physician, you might want to reflect on the last interaction you had with a doctor or other health provider. Did you feel free to talk about anything that was on your mind? Were you free to talk about your condition or concerns in the way you wanted? Who spoke first, you or your physician? Who spoke more often during the conversation? Had you planned in advance what should be discussed or did you write specific questions that you wanted answered during the visit? If so, was that plan followed and were those questions answered? Did both you and your physician ask questions? Did you feel that the doctor really listened to what you had to say? When you left, were there issues you had hoped to discuss that never were voiced? As you mentally respond to these questions, consider also who or what has influenced your notion of how a patient is “supposed” to behave.
The tradition of medical paternalism has existed for centuries across many cultures. It emphasizes the dominant role of the physician in providing authoritative advice. From a communication perspective, physicians have tended to be socialized into a "high control" style of interaction in which they talk a greater amount of time, ask more questions, give more directives, and interrupt more frequently than do patients (Waitzkin, 1984). Correspondingly, within this model, patients assume a reactive role in which they voice their health complaints and comply with medical recommendations. However, the past twenty-five years of scholarship in patient-physician communication in the U.S. reflects an alternate representation of how patients and physicians may interact, differentiated by elements of more active patient participation. The movement toward patient activation has had an impact in changing the way that physicians are educated, with a shift toward "patient-centered medicine” (Stewart et al., 1995).
Several conceptual models have envisioned what the role of a more active patient might be. Physician Timothy Quill (1983) was the first to introduce the notion of the doctor-patient relationship as a partnership, which he described as a contract developed through interaction in which both parties consent to the relationship, have unique responsibilities, are willing to negotiate, and benefit through the interchange. The importance of mutually exchanged information has been recognized as an essential component of health care partnerships. Patients’ expertise regarding their own personal capabilities, constraints, resources, and values, as well as self-knowledge of their own bodies and emotions, can be seen as an essential counterpart to health professionals’ clinical judgment. Both forms of knowledge--the physician’s expertise with medical science and the patient’s expertise with the subjective experience of health problems--need to be combined through interpersonal communication in order to effectively reach a diagnosis and to develop a plan of care (Sharf, 1984).
Other ways of examining the patient-physician relationship emphasize the concepts of power and control. While medical paternalism accords power to the physician, the market-based model of health care consumerism and the ethical model of patient autonomy position the patient as the more powerful, and possibly sole, decision-making agent. Public health researcher Debra Roter and her colleagues (Roter & Hall, 1993; Roter & McNeilis, 2003) have developed a four-point matrix that plots a comparative level of control, high and low, in the context of physician-patient interaction. As a dynamic interpersonal exchange, the behaviors and activities of either participant have the potential to change the nature of the relationship. The matrix describes different types of physician-patient relationships (three of which have been already mentioned above): default, in which there is low control for both patient and physician; consumerism, in which the patient exhibits high control and the physician low control; paternalism, in which the physician exhibits high control and the patient low control; and, mutuality, in which power is balanced between the patient and physician so that goals, agendas, and decisions related to patient care are negotiated. Mutuality, then, is another way of describing partnership.
Focusing on communicative behaviors, health communication scholar Richard L. Street, Jr. (2001) identified four verbal features of active patient participation during medical consultations. These include asking questions to obtain and clarify information; expressing concerns such as worry, fear, or anger; being assertive in stating opinions and preferences, making suggestions, disagreeing with the clinician, and interrupting in order to be able to speak; and sharing one's health narrative, which will be explained in detail as we present Joanne’s story.
Numerous studies provide evidence of the beneficial outcomes of patient activity. Several investigations have documented that simply coaching patients to ask questions of their health providers can result in increased satisfaction and adherence by the patient to providers' recommendations. A major breakthrough came with studies (e.g., Greenfield, Kaplan & Ware, 1985) that demonstrated a correlation between increased patient question-asking and other forms of involvement during encounters with physicians and improved health outcomes, such as briefer recoveries, decreased discomfort and need for medication, and improvement in chronic symptoms. Patients enacting participative behaviors also receive more information, elicit more support, and may influence the quality of care received from health providers. These results contrast strikingly with documentation of negative outcomes when patients, especially those hampered by the effects of illness, don’t have the skills, motivation, or strength to press for clearer explanations from physicians, especially for such important topics as unexpected treatment outcomes and medication side effects, as well as confusion about whom to approach for help (Heymann, 1995).
This brief review of active patient participation sets the stage for examining Joanne’s story in detail. For her, active patient participation, enacted through her questions and open communication with her endocrinologist, has the objective of eventually achieving physician-patient mutuality and partnership, as well as improved health outcomes. With this background in mind, we re-enter Joanne's situation, based on the health narrative she told to an interviewer. What the research literature does not adequately describe is the process through which a patient works toward a self-perception of being active and in control of her health care. Being an active patient and a partner with one's health provider is not an all-or-nothing nor a once-and-for-all state of affairs. In exploring Joanne's experience in some depth, we are able to glimpse personal development in progress.
Joann’s Story
At my first visit with Dr. Winner, I wanted to see if he was going to be my doctor, and so I made my usual statements: ‘My goal here is to be in the best health possible. Diabetes affects everything that I do; it's become a major part of my life. I want you to put me in the grave with all my limbs. In other words, when I go, I want to go with all my limbs if possible, and if that means dying early by age sixty, that's fine, just so that I can have all my limbs.’ He was kind of shocked. In my mind I was being an optimist and I was pushing it, going for[age] 60, but he just sat back in his chair. I started to go into details, and then he said, ‘Okay, I understand, . . . but I don't think it has to be that way. I'm going to treat you and do these tests and then I'm going to call you back in,’ and that next visit was when we started to have the open dialogue. . . . The second time that I saw Dr. Winner, I made up in my mind that he was my doctor.

Being able to tell the story of one’s sickness to physicians, as well as to family, friends, and co-workers, is another way patients communicate active participation in their health care (Street, 2001). Individuals use story formats to make a disorderly world coherent and to justify their chosen ideas and actions (Fisher, 1988; Bruner, 1990). In addition to sense-making and warranting decisions, illness narratives also serve the functions of asserting control (especially in the case of diseases that seem to defy control), transforming the identity of the story-teller, and building community with fellow sufferers (Arntson & Droge, 1987; Sharf & Vanderford, 2003). During the process of telling the story, the distinct voice and style of the narrator becomes apparent.
In response to the patient’s narrating her illness during a medical consultation, the doctor may not listen well or give credit to the patient’s rendition. On the other hand, the physician may provide a very understanding hearing of that account and take part in its further development. Thus, a patient’s illness narrative may sometimes serve an additional purpose. The patient-physician relationship may be transformed and strengthened as a partnership when both contribute to a mutually understood story of the patient’s sickness.
The overarching plotline that Joanne emphasizes within her story is her struggle against diabetes by seeking ways to change her primary health narrative of how she lives and deals with this disease. Diabetes has existed in her family for a long time, and Joanne has witnessed many of its ravages. She speaks of these consequences in a rather matter-of-fact tone, as they are a regular occurrence and a natural part of her existence, even though the topics she talks about are of grave significance to her family and her own health:
Joanne: I found out that I had diabetes at 25. You see, I come from a family of diabetics and we call it 'the curse.’ On my mom’s side of the family, her mother and her father had it. My grandmother was blind all my life and she died of kidney failure as a result of diabetes. Half of my mom’s brothers and sisters--there are nine of them--have diabetes and related illnesses that suggest heart problems and so forth. And on my dad’s side of the family it’s worse, it’s bad. Everybody on my dad’s side of the family takes insulin and have had parts missing because -
Interviewer: By ‘parts missing,’ you mean amputation?

Joanne: Yes. My grandfather had no legs; my dad has no legs, and part of his chest is missing, and part of one hand missing, and he can only see out of one eye, but not very good. Also, my dad’s brother has one hand missing, and one leg missing and so forth. And so it goes in the family. There are seven kids on my dad’s side of the family; all of them have diabetes.
Stories are not an exact recounting of real-time events, but instead are a re-creation of what happened in a way intended to advance a particular purpose for certain listeners. Narrative construction includes emphasizing certain scenes and sub-plots, while focusing on selected time sequences, motives, and values. They are told in the present time about past events, providing opportunities for the narrator to create a certain point of view or perspective. As Joanne adds to the background information about the disease that is central to her life, she describes her family’s patterns of behavior with respect to diabetic management as extremely passive. In the process of characterizing her family, their symptoms, and the physicians who have treated them, Joanne identifies a hero (her current physician), villains (other doctors), and by-standers who are both innocent and complicit (her extended family). Most of her family has received care from local doctors who she perceives as not aggressive enough in their care for diabetes. Joanne prefers a doctor who will take a more vigorous approach to dealing with diabetes, and this has set up a tension between her and the rest of her family members.
And so when I told everybody at the family reunions that I was seeing an endocrinologist on a regular basis and that he demanded that I have lab tests and so forth, they were all shocked. And I told them it’s the best thing that’s happened because I actually feel good sometimes instead of feeling bad and tired and weak. I feel good, and when I start to feel bad, I know to call him and say, ‘Okay, something’s not right, my sugar levels are out of whack, what’s going on here? I need to come in and have this checked.’ And I said [to the family], ‘It’s good to have an endocrinologist.’ No one had one, no one had heard of one, and by this time my dad already had one leg amputated, and he had never seen one. Most of us have the same family doctor, and nobody wanted to switch. So, when I started seeing another endocrinologist, it took my dad another year or two to see one.
Joann’s story takes us back to the narrative theorists who suggest that human beings are not only storytelling beings (Fisher, 1988), but also “story living” creatures (Allison, 1994). Any story about current life experiences shared with others is one in which the narrator is both in the midst of telling and in the midst of living or experiencing. Joanne’s account highlights two critical conflicts ongoing in her life. The first is the tension between Joanne and her family regarding the treatment they have received, including her strong feelings toward doctors that she feels are not aggressive enough in their approach to diabetes. Her stance is evident in her discussions regarding actions taken about high cholesterol levels:
And so Dr. Winner showed me what a good cholesterol level was and I was upset, because I didn’t find that out until I was 34 years old and apparently, I’ve had high cholesterol for the longest time. No one else in the family knew anything about cholesterol being an issue. So when I went home for Christmas I said, ‘I’m taking Zocor now. Anybody else taking anything for high cholesterol?’ And they said, ‘Oh, no, no, no.’ I had an aunt that I asked, ‘Is your cholesterol level still running over 400?’ And she said, ‘Well, the last time I went, it was 600 and something. In fact, they’re thinking about doing something because of stroke or whatever else.’ I said, ‘Thinking about doing something? My doctor is having a cow because I’m at 325 and you’re at 600 and something, and they’re thinking about doing something?’ I said, ‘I think they’re suppose to be doing something.’
Joanne wants a relationship with a doctor that is based on sharing of information. As such, she is well prepared when she goes to the doctor, and she expects that the doctor will respond in kind. This active stance that Joanne takes has not always led to good results:
I have questioned doctors in the past and they have gotten upset about it. When I take lists of questions with me to doctors, they say, ‘What are you doing, auditing me?’ I used to be an auditor by trade, and so they say, ‘Every time you come in, I feel like you're auditing me,’ and I have to say, ‘No, I'm not auditing you. I just need to know these things, so I can help you treat me.’
With Dr Winner Joanne finds someone who is willing to listen, who understands, and who will give her the information that she wants. However, even though Joanne describes herself as a very active patient, there are limits to her participation. The second major conflict evident in Joanne’s narrative is her fight with life style choices that contribute to ill-health. Throughout her story, she describes herself as being engaged in a struggle to gain control over her diet. She describes food and wine as being her “major vices”; she sees these indulgences as worsening her diabetes, keeping her from reaching her goal of making it through life without amputation, and being a force with which she has to contend. She looks to Dr. Winner as a powerful ally, but also as an authority. Even though she comes to the relationship as a very active communicator, she concedes much power to Dr Winner in the struggle to contain the food and wine:
Interviewer: Of anybody or anything, where does the control lie with your diabetes?
Joanne: Right now, for the first time in a long time, it's Dr. Winner. Usually, I would say that I am controlled by food and wine because I don't have will power, but now the control is with Dr. Winner because he has information on his side and has been giving me better medications to not only where I feel better; there are medications that are treating both this bad habit that Joanne has and this bad illness that she has. I have the sugar level that he wants me to have and I have the cholesterol level that he wants me to have, which all are major players in diabetes. . . . Before, other doctors didn't have control over what medication they were giving me, and I didn't have control over my habit or my need or what I thought were my needs. The food and wine had control of the diabetes, and it was going downhill.
Interestingly, even though Joanne credits Dr. Winner as having taken control of her diabetes, at another level she is the one in charge of choosing who is acknowledged as an expert and with whom she aspires to partner. The power she yields is conveyed in an incident she describes in which her doctors give conflicting advice on medications:
. . . we had a battle going between my gynecologist and Dr. Winner . . . . they have been trying to switch medications for each other and of course, naturally I’m going to go with Dr. Winner’s recommendations because I feel best under him . . . . Well, Dr. Winner said, ‘The gynecologist didn’t think about your kidneys, did he? The medication I started you on is what you need. Which one would you rather have: good kidneys or hair growth”? I said, “Well, you know, I think the good kidneys are a good thing.” So, I called the gynecologist and said: ‘Well no, I’m going with Dr. Winner.’
Despite not yet feeling that she can manage diet issues on her own, Joanne visualizes a future in which she will be able to take a more active role in terms of managing her illness:
Because Dr. Winner and I work so closely together now, that in the future I think I will have more control over the diabetes, which is very important to me. You probably can tell that I'm kind of a control freak. I think in the future I will be able to be a major player in fighting the diabetes.
Thus far, we have highlighted the main issues that constitute Joanne’s illness narrative: having diabetes as a consequence of family history, repudiating her family’s passivity in dealing with this life-altering and life-threatening disease, setting her own objectives for survivorship, and affirming Dr. Winner, her endocrinologist, as the major authoritative force in coping with diabetes. In our continuing analysis of Joanne’s story, we examine the complexities of her ongoing process of changing the plot of her life story and her striving to be a “major player” on her own terms.
“What Story Am I In?” Times Two
Dr. Winner recognized something in me and he told me, ‘You’re extremely competitive, so, what I want you to do when you go to walking’. . . . I have to walk from the parking garage all the way down to the building that I work in. He was saying, ‘And how often do you do that?’ I told him at least twice a day going and coming. He said, ‘Well, try to make an exercise out of it.’ Now I find in the morning that when I get out, you know, I’m looking for that person who’s walking fast and [I] say, ‘I’m going to try and beat this person, see if I can get there before that person does.’

In this interview Joanne portrays what she has been living, a multi-layered story of diabetes. Her family’s experience with this disease, strengthened genetically through marriages, constitutes an ongoing epic, affecting successive generations and taking a gruesome toll in quality and length of human life. Given its prevalence, even with the consequences of impairment and premature death, living with severe diabetes has become routinized within Joanne’s extended family. Patients’ ways of explaining symptoms, causes of disease, and possible remedies were described earlier as explanatory models. An understanding of a patient’s explanatory model helps a physician to decide how to approach clinical care with that individual (Kleinman,1988). Not only has Dr. Winner considered “What story am I in?” with respect to developing a plan of care, but we also see through Joann’s telling of her story that she has also begun to confront the question of “What story am I In?” in her own struggle with health maintenance. The dominant explanatory model within Joanne’s family is one of diabetes as hereditary, an unavoidable fate. Driven by this explanation, the family has taken what Joanne considers a comparatively passive and reactive stance in terms of health-seeking behaviors. They see the same family doctor that they have seen for years. That practitioner provides them little information, and what information they have received has sometimes been inaccurate. Even when the family receives updated information from an endocrinologist or from Joanne herself, they usually choose to prioritize the authority of the family doctor. As Joanne’s testimony reveals, the results of this routine has been disastrous for her family’s well-being. For their part, Joanne and her brother (who also has the disease) cynically refer to diabetes as “the curse”:
. . . it’s that family curse that we have. . . . And so, yeah, we blame our parents, at least I do. ‘Couldn’t marry a non-diabetic could you? You just had to double-or triple--our chances of getting it [by marrying each other].’
Joanne also describes a transformation of identity triggered by her diagnosis. Although she grew up in the extended family saga of diabetes that included not only the litany of missing limbs but other life-threatening problems (“Who had a stroke or a heart attack since the last family reunion? . . . and we all assume that it is related to the diabetes, and it is”), she considered herself “blessed,” thinking she had been spared. However, at age 25 she discovered that she, too, shared the family’s fate:
By the time I found out that I had it, it was full blown. I had the same family doctor my dad and everybody else had, who never checked me for it. The doctor that finally told me I had it said, ‘You probably had it all along because when you walked in the door I could tell, I knew that you were a diabetic.’
Not only was Joanne faced with adapting to her illness, she also struggled with a sense of betrayal, having been denied crucial information:
All I wanted to do was try and correct it, and see if there was anything that we could reverse, if I could go back to not being a diabetic. I thought, ‘I don’t want to be like everyone else.’
It is at this point that emplotment, meaning a focus on “what story am I in” (Mattingly, 1999, p. 72) becomes an even more predominant element in Joanne’s narrative. As onset and adaptation to serious illness inevitably causes patients’ life stories to change in many ways, how Joanne answers this question mediates between the multiple forces that created who she was and who she has become through the illness, and is critical to her ongoing well being. Joanne made the decision to do all that she could to construct a different plotline for herself than the one enacted by the rest of her family. Her effort was facilitated by changing both the scene and the physician-character within her narrative. By moving to another city and searching for an endocrinologist, in lieu of the family doctor, to advise her health care, she very purposely broke with the family epic. While she was not able to change her diagnosis, she realized that she could change the way in which she lived the experience of illness.
By her own account, Dr. Winner played a key role in helping Joanne find an alternative, more satisfying story. Through the process of narrative collaboration, patient and physician engage in history building versus the more commonly used metaphor of the doctor taking a medical history or gathering data from the patient (Haidet & Paternini, in press). Together they developed a plot to “locate desire” (Mattingly, p. 107), that is to find the motivating factors for Joanne to cope with or overcome the problems engendered by diabetes. For instance, in the excerpt at the beginning of this section, Dr. Winner uses recognition of Joanne’s competitive nature to turn a daily walk to and from the parking garage into a race, so that the walk becomes good exercise for her.
At the time that Joanne gave this interview, she had transitioned from a narrative of acceptance to a narrative of struggling for control. At one level, that struggle focused on gaining control of dietary habits. This is a problem facing every individual diagnosed with diabetes. In Joanne’s case, as she clearly explains, it is an issue deeply rooted in family traditions and regional culture:
We’re from Louisiana. In that area of the country, food and wine will probably be the top two vices for anybody. So, getting diagnosed with diabetes was a big let down for me because I love to cook, and I also collect wines. I love wines. I look at a list of things that they recommend that people should not eat in general and things that diabetics should not eat. I mean everything, if you put those two lists together, everything on them is what we eat on a regular basis in our family.
With this background, it is not surprising that Joanne finds herself in a continuous and difficult effort to make the necessary changes in her dietary lifestyle. She credits Dr. Winner for helping her to find the motivation for coming to grips with her vices. Through her discussions with him, she comes to realize that while she cannot change the genetic script underlying her disease; it is possible for her to change her diet and exercise patterns. Taking charge of these issues can potentially change the outcomes of the diabetes saga for Joanne, and allow her to achieve her objectives of living longer, and with all her body parts intact.
There is a second angle to be considered in Joanne’s narration of struggling for control, namely the relational perspective. In response to the interviewer’s question about where the control for her illness lies, she unhesitatingly states that it is with her physician. Her reasons for acknowledging Dr. Winner in this way are multiple; he provides information that other clinicians have not and he has prescribed medication that helps Joanne to maintain sugar and cholesterol levels in a desirable range. Repeatedly, she confirms her confidence in her endocrinologist:
Dr. Winner is my primary doctor, because sooner or later everything gets back to him. Whatever doctor I go see is going to talk to him.
Not only does Dr. Winner’s advice trump the recommendations of other physicians, to Joanne he is the counter-balance to her own intrinsic weaknesses:
He has the most control because he still has to do the prodding. He still has to come in with more and stronger medications because I don’t have control of the food and the wine. So, to me, he has the most control over the diabetes, because if he stopped giving me the information and everything I need, then it would be out of hand completely, because I wouldn’t have the will power to try to get it under control myself.
The struggle for control as depicted in Joanne’s narrative is complex. In the course of telling her story, she makes very clear that she has re-defined her life goals in relation to her illness; she has chosen to prioritize Dr. Winner’s advice over recommendations from other physicians; she questions and monitors medical information presented to her; and she has made some progress in making lifestyle changes, such as exercising more regularly. In other words, Joanne has exerted a great deal of self-management, using her own resources in coming to grips with her illness, even though she identifies her physician as the person who is in charge.
Narrative, Joann, and Active Patient Participation
I want to be happy and have a good life, the best possible life, and that means having good health, if it’s possible. I will do what I can and, Dr. Winner, he will do what he can to make sure that happens. His job is to monitor and tell me when I’m getting out of whack, or it will cause potential health problems, or I’m going down the wrong path. . . . His role is to make sure that I can maintain and have good health.
This review of Joanne’s health narrative immerses us in details that are, of course, unique to this young woman’s disease, family history, and cultural upbringing. Yet in some important ways, Joanne is emblematic of many people; she longs for a story that ends “happily ever after” yet the reality of the family saga in which she lives provides a different envisioned future. We began this story with the Portrait of Emy and the way she represents a simultaneous struggle between a desire for truth and a fear of what that truth could reveal. Considering patient-provider interaction through a narrative lens underscores the opportunity for both patient and provider to enter into the liminal space of the story to understand circumstance and to negotiate active health participation. Though Joann is not pleased with herself for lacking sufficient will power, she sees herself working toward being more in charge of her own health situation, a move that will shift the terms of her relationship with her doctor:
Joanne: . . . he will probably be taking more of the role that he should have; that is, one that comes in only when there’s an issue instead of having to monitor all the time. Because it’s my disease; I have it. I should be the one because I have the capabilities with the testing machines and whatever that monitor my disease.
Interviewer: So, when that day when you have more control arrives, Dr. Winner will be more of a consultant than a controller?
A: Yeah, and absolutely.

Geist-Martin, Ray, and Sharf (2003) identify communicative competencies that characterize proactive patients. The first of these is agenda-setting, meaning that
highly activated patients plan in advance what issues they want to bring to their doctor’s attention and state these concerns at the beginning of the interview. Second, this kind of patient takes an active role in sharing information, which means an ability to “tell your story succinctly yet assertively, highlighting those factors that describe your concerns, symptoms, and ideas about what is going on” (p. 334). Third, as has been mentioned above, the ability of patients to raise questions with the physician has proven to be one of the most significant and influential communicative acts, including queries about technical terminology or alternative treatment options. On all three counts, Joanne has participated actively with Dr. Winner, as well as other practitioners she with whom she’s consulted.
The fourth communication competency involves assuming an active role in negotiating treatment decisions; patients vary as to the extent they wish to be involved in participatory decision-making, but the trend is toward increasing involvement (Deber, Kraetschmer, & Irvine, 1996). This is the point with which Joanne finds herself struggling in terms of needing to be directed by the endocrinologist. Eventually, she hopes to be a more proactive self-manager, with Dr. Winner as her consultant. Health empowerment is a state of feeling relatively powerful and in control of one’s life on the basis of concentrating time, effort and personal resources to improve health-related problems (Geist-Martin, Ray, & Sharf). Joanne is on her way, but she’s not quite there yet.
In fact, Joanne represents many, and perhaps most, patients. Few of us are naturally well-equipped to assertively collaborate with our physicians and assume the role of active health decision-maker. The communication competencies required need to be further defined, honed, and practiced. People, especially people striving to cope with serious illness, are often not in the best place to counter the centuries-old attitude of deferring to medical experts, and making their own opinions, values, and feelings known. At the same time, Joanne represents an increasing population suffering from chronic, ongoing diseases that will persist throughout their lifetimes and must be largely managed in patients’ own environments rather than medical facilities. Though challenging, it is especially important for such seriously ill individuals like Joann to come to grips with what level of health-related participation and self-management is appropriate for them. Assuming increasing degrees of involvement and self-responsibility tends to occur and improve over time and experience.
Active patient participation, which Joanne is both enacting and striving toward, can be portrayed on two continua: 1) the continuum of engagement with the illness experience, and 2) the continuum of negotiated control with regards to illness decisions. In detailing these two spectrums, we are claiming a distinction about active patient participation that previously has been treated as a single entity.
The sequence of developments represented in each continuum is important conceptually. The first continuum describes the degree to which a person is either engaged with her own illness experience or not. Engagement from this perspective implies a sense that one can influence the course of one’s own experience of illness and health-seeking. The opposite of engagement is fatalism, a sense that one’s course of illness is predetermined and that no one (not patient, doctor, family, etc.) can change the outcome or the way that the experience will unfold. A state of high passivity makes a collaborative relationship with one’s physician irrelevant, because in such a state, control over illness is not achievable. A patient in a state of passivity, therefore, is unlikely to partner with his physician, because health professionals, in the patient’s eyes, are helpless as well. At the other end of this continuum is a state of high activity and deep engagement. Individuals at this end have an empowered sense of being able to influence the lived experience of illness, without discounting a realistic perception of what factors are and are not changeable. As her interview documents, Joanne is closer to the active end of the engagement continuum, though she is not yet in the most fully-developed position.
Continuum 1: Engagement with the Illness Experience

Passive Active
(Fatalistic) (Empowered)


The second continuum describes the spectrum of negotiated partnership in making health care decisions and managing chronic illness. This continuum recognizes that illness presents a series of decisions that can impact the way events will unfold, as well as the meaning of such events. Both patient and practitioner can have varying levels of influence over these decisions. It is important to note that a person can be a very active participant in terms of engagement with the illness and health-seeking experiences (Continuum 1) and still cede much of the influence over health-related decisions to the doctor. In this case, the person is still an active participant by intentionally deciding to confer primary influence on the decision process to the doctor. This is Joanne’s current developmental position. She aspires to eventually move nearer to the patient influence end of the continuum, though not to the extreme end; instead, she wants to modify the collaboration she has already established with Dr. Winner.
Continuum 2: Negotiated partnership in health
decision-making and illness management

Absolute Absolute
Patient Doctor
Influence Influence

Equal Doctor/
Patient Influence

with Where Where
respect to Joanne Joanne
Dr Winner wants to be is now
and food
& wine
Perhaps Dr. Winner is able to understand the frustration that Schmidt-Rottluff has portrayed in Portrait of Emy. Dr. Winner has helped Joann to figure out what story she is in; he has made a huge difference in serving as a co-author in Joanne’s unfolding account. Joanne ascribes power to Dr. Winner on the basis of his willingness to impart expert information, ability to prescribe helpful medications, and impact in assisting her to adapt more healthy behaviors. More specifically, she perceives that he has been instrumental in illuminating narrative options, thus enabling her to move from the fatalistic family saga with a predictably tragic conclusion to a more optimistic plotline with feasible alternatives that she can make happen with a potential for a happier ending.

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